Vertigo, ataxia, migraines, brain fog, weakness, difficulty swallowing. I was trying to become more aware of everything I was experiencing…everything. I think that only made things worse for a while. I began to recognize more and more symptoms. It’s no wonder this was so confusing to me and my neurologists. I noticed that I was avoiding eye movements. Looking around the room and attempting to focus on an object caused vertigo and pain behind my eyes. I began looking straight ahead in a narrow field much of the time, avoiding the pain and vertigo as much as I could. I felt a sensation of weight pushing down on my neck at the base of my skull. At the end of the day, when I would lie down in bed, my legs felt heavy and a little tingly; similar to how they feel the night after running a long race, like my nervous system is overly fatigued. To ensure that we weren’t missing anything, Dr. Mudivarthi referred me to a neurosurgeon in Redwood City. The neurosurgeon reviewed my MRI’s and could not identify any signs of disease or injury in my brain or spinal cord. I sought a third opinion from another neurologist at Kaiser, who concurred with my first two neurologists. Up to that point, we had tried everything that we could have. My Chiropractor also reviewed my MRI’s and X-rays, he also could not come up with a plausible explanation for my troubles. It seemed that my problems were neurological in nature, but the many different symptoms that I was experiencing didn’t necessarily point to one disease or disorder. In fact, they could have indicated many different neurological conditions.
Prior to the appointment for the nerve conduction and muscle function study, I tried to assure myself that everything would ultimately be fine, but that didn’t work very well. However unlikely it was that I had a motor neuron disease, my mind could not resist slipping into a place of fear for what the diagnosis could be. I was afraid of the possibility that I could be permanently disabled or be facing a life-threatening situation. Was it possible that all of my symptoms were the early stages of a serious disease or disorder? Was I going to end up disabled, and not be able to enjoy whatever time I had left? Would I become a burden to Tammy and my family? These were some of the questions that I was asking myself back then. Those questions almost seem irrational to me in hindsight, but with what I was experiencing at the time, I understand why I was so scared. Here I was, a longtime runner, personal trainer, a proprietor, employee of a gym, and working in a Physical Therapy clinic; and I could barely walk.
One night while I was closing up the front windows of our house and navigating around two chairs, I turned my head and my legs completely gave out. I crashed to the floor without warning. I had to pull myself up with help from the coffee table because I did not have the leg strength to lift myself. Nothing like that had ever happened to me. Helplessly falling to the floor, while simply trying to walk around our house, was demoralizing. I was already unable to run, or workout in any other way; and it was getting increasingly difficult to work, but now regular daily activities were becoming unsafe to perform. I began to fear that I would never completely recover. For the first time in my life, I felt like my body was failing me. Having to wait for the next diagnostic step was becoming harder by the day.
When test day arrived, I woke up pretty excited despite my fear. I wasn’t going to have to wait much longer to get the results of the neurological tests. However, had I known exactly how painful those two tests were going to be, I probably would have been dreading that appointment. Nerve conduction and EMG/muscle function studies involve probing various nerves and muscles with needles; applying electrical signals to the nerves and measuring the electrical activity inside the muscles while contracting them. This allows the doctor to evaluate the health of the nerves and muscles. Both tests combined for the most acutely painful experience I have ever had. Having needles inserted into my muscles, then contracting them as hard as possible, and having my nerves shocked almost directly, is something that is impossible to prepare for. Perhaps the worst part of the tests was that each individual pathway had to be tested several times to ensure that they were functioning well. The anticipation of each subsequent electrical shock, made me tense up even more than the last, increasing the pain sensation further. Unlike the MRI’s, the nerve and muscle function test results were determined on the spot. I passed both tests, in fact my nerves and muscles were functioning quite well.
Passing those tests may have been the biggest relief I have ever had in my life. Of all the possibilities I had feared, and with all due respect to all other long-term diseases and conditions, degenerative motor neuron diseases sound like the worst to me. The thought of wasting away and losing my ability to move is almost too hard to imagine, and I had been obsessing about that for days. The hope of a diagnosis, fear of what it could be, and disappointment of not getting the answer, had taken me on an emotional roller coaster. It had only been three weeks, and I seemed to be at the hospital doing a new test most days of the week. The constant attention paid to diagnosing my condition made it feel like months had gone by. The uncertainty remained, but my greatest fears had been allayed by passing the neurological testing. I still wanted answers, but it didn’t feel as if I needed to worry as much for the time being. Instead, I needed to focus my energy on trying to rest and recover.
Because my problems had gotten so out of hand, I had to start scaling back many of the activities that aggravated my symptoms. Because almost everything aggravated my symptoms, including work, I had to start carefully prioritizing when and where I spent my time working. At the time of my injury, I was working as a Personal Trainer at Body Kinetics in Novato, as a self-employed Personal Trainer with clients in San Francisco and an assisted living facility in Novato, and as a Physical Therapy Aide at a clinic in Mill Valley. I quickly learned that my job at the clinic in Mill Valley was the most problematic and expendable of my three sources of income. I had been considering going back to school for Physical Therapy, and my experience at the clinic was meant to help me determine if a career as Physical Therapist was going to be the right path for me. Physical Therapy felt like an ideal career choice, after having so many great experiences as a patient, in PT clinics around the Bay Area. I have had numerous running and work-related injuries over the years, and the Physical Therapists and Athletic Trainers I worked with were always critical in helping me successfully return to form as quickly as possible. Few things are as satisfying as helping a client achieve a major health goal or get their independence back by being able to function better in their daily life. I wanted to be able to help others overcome medical conditions in ways that I cannot as a personal trainer, while utilizing the skills I have developed as a Personal Trainer to achieve even greater outcomes.
The role that I had as a PT Aide at the clinic in Mill Valley required a great deal of multi-tasking, and many movements and tasks that triggered my ataxia. I found myself unable to handle multiple tasks at the same time; bending down to pick up a light weight or object from the floor caused me to lose my balance and I began having difficulty with my mental focus and mental fatigue. My thought processes were not working properly, it seemed to take a very long time to make decisions, and my ability to recall and store information was impacted. Those problems compounded throughout a shift, leaving me practically useless after several hours. I could no longer physically or cognitively handle all of the stimuli that the clinic placed upon me. Several weeks after my injury, it became clear to me that I could not perform the duties required of my position, and that I had to sacrifice my time somewhere for my own health. I was out indefinitely from working at the clinic. At 38 years old, I had already been concerned about going back to graduate school in my forties, and starting a third career with a large student loan debt. Having to step back from my potential preparation for a four-year Physical Therapy program, felt like the death of that dream. How was I supposed to be able to take the time to recover from my mystery illness or injury, spend several years preparing for graduate school, then spend four more years in a Physical Therapy program on top of that? My injury was now becoming a threat to the growth of my career.
Until I started to improve physically and cognitively and had more energy, I had to focus on my personal training business and employment at Body Kinetics. If I kept deteriorating, I would have had to go on disability, which would have taken a horrible toll on my client base. Because most of my income was coming from my personal business, I wouldn’t have been able to recoup most of my income through disability. Each personal training session that I trained, felt like half a day’s work; and I needed to make sure that I wasn’t over-working myself. I was faced with a conundrum, take a complete break, with very little income; or grind on, hoping that I would not significantly hinder my recovery. I chose to keep working. I did everything that I could to keep training my clients and to maintain as much of my income as possible. I was in survival mode and was doing my best to get by each day. My hope was to maintain just enough, until I began to feel better; and to eventually figure out the cause of what I was going through. The problem with that mindset was that I put all of my energy into my personal training sessions, and was often left without the energy to properly focus on my recovery. I couldn’t even comprehend what was best for me in the long term. Instead, I typically went home between sessions and zoned out and napped for several hours. Although I was resting, I wasn’t progressing at all.
I didn’t know when or if this quagmire I was in was going to end. I realized I was going to have to alter my life to accommodate my condition. But because the situation was so confusing and complicated, I did not have any idea how to adjust properly. My condition was not steady, it affected me in different ways on different days. It was hard to identify any triggers, because I always felt terrible. How much was I supposed to work through the dysfunction? How much rest and recovery did I need? Should I have been going on disability in order to rest completely? What was even wrong with me? I began to lose hope that I would find a cure. Looking back on it, pushing through my injury was clearly not the best way to recover. I might have recovered much more quickly if I went on disability and took a complete break from physical activity. However, disability felt like giving up too soon. Had I given up then, I doubt that I would have been able to make a comeback at all. Had I thrown in the towel that early, I would not have learned so much about myself. It was through this period that I learned how to be a survivor, emotionally. It’s also how I learned to appreciate the good days when they occasionally returned. Though I learned a lot through this period, it would be a long time until I would be able to allow myself to benefit by getting myself into a better place emotionally. Eventually, I realized that being in a better state of mind would be critical in my recovery.
On August 25, 2018, my wife Tammy and I were getting ready to leave for her parents house, to celebrate her Mother’s birthday. I squatted down very low in the kitchen, of all things to take a video of our cat Neptune, eating tuna out of a can. When I stood up, I felt an incredible rush of pain running from my neck, around the top of my head and behind my eyes. It staggered me so badly that I had to grab onto a cabinet to balance myself. I have gotten many head rushes after standing up too quickly, but never had I experienced one painful or intense, as that was. I didn’t realize it in that moment, but it was perhaps the most important moment in my life, it was a turning point in my health. From that point in time, I would be sent down a spiraling path that would eventually seem hopeless; before I would stumble upon a potential cure, then gradually work on putting my life and career back together. It would take months for me to feel like I was recovering. Then just as I believed that I was getting back to normal, I would again suffer from another rush of pain, incoordination and the reality that I was still far from recovery. The initial period of time following my injury was scary and confusing, yet it was far from the worst period I have endured along this journey. That initial crisis is what I write about in this post.
Within hours of that incident, I began to have difficulty walking, I was clumsy and my legs were weak. The next day, I felt even weaker and had trouble staying mentally focused for longer than several minutes at a time. Within days, I couldn’t walk very far without a cane, and walking up a short flight of stairs left me so uncoordinated that I could fall over with even the slightest of missteps. I had never been so weak or clumsy in my life. I emailed my Neurologist to let him know what I was experiencing. Dr. McCarthy’s staff contacted me the next day, to set up an MRI appointment and to fit me into his schedule that week. He wanted to see me right away, in order to assess whether this was serious or not. During my office visit, he performed various neurological tests and believed that I had not suffered any trauma to my spinal cord, and that there were not any other clear signs of illness or disease. The next step was to do the MRIs and wait for the results.
In the days between the office visit and the scheduled MRIs, my condition worsened. I was so clumsy that simply turning my head would make me stumble and nearly fall. My condition was beginning to become hazardous to my health. It got so bad that Tammy took me to the Emergency Room one evening, which expedited my MRIs due to my worsening symptoms. The following week, MRIs were taken of both my brain and cervical spine, a procedure requiring me to be deep inside the MRI chamber for almost 90 minutes.
Following the procedure, I had so much difficulty standing and walking that I had to be wheeled to my car by a staff member from the MRI department. Strangely, I was able to drive home without much difficulty, but once I was standing again, I became uncoordinated. I walked like I was heavily intoxicated, a condition called ataxia, which can have many causes. It can be from benign conditions or from something very deadly. The results of the MRIs showed nothing out of the ordinary. With no obvious sign of anything serious, the hope was that I would recover with extra rest. However, over the next two weeks my ataxia did not improve, it worsened.
I continued to work with my clients, but found it significantly harder to do so. Lifting moderately heavy weights or getting up and down from the floor, an important part of my job as a Personal Trainer, intensified my ataxia. One day, I was doing mild exercises with a 88 year old client, marching in place while holding onto a balance bar. As I lifted one knee, then the other, I began to lose control of my legs and my feet would clumsily slap down onto the floor. My 88 year old client, who has several serious medical conditions was performing his exercises better than I was. This became a daily problem, forcing me to adapt many aspects of both my personal and work life. I began limiting how I demonstrated exercises, utilizing more standing exercises, to avoid aggravating my condition. My job became more difficult in strange ways, as well. Walking down the hallways of an assisted living facility, where I have several clients, triggered intense ataxia episodes. By the end of the hallway I would be so clumsy that I would need to use the hand railing to steady myself. Something about those hallways was a trigger, it did not make sense to me at the time. Even my ability to do the administrative activities related to Personal Training were impacted. Looking down at a clipboard would make me lose my balance, and I was struggling to write legibly. The physical and administrative impacts of my injury were beginning to take a toll on my ability to make money.
After two follow up visits with Dr. McCarthy, and no improvement, we were still without a diagnosis. When lying down I was only a little weaker than normal, when standing my legs were very weak and clumsy. Climbing and descending stairs triggered my ataxia, but driving was only slightly harder. Even Dr. McCarthy was confused, as I would realize during one office visit. It’s never a good sign when your neurologist does several tests, pauses, then mumbles, “hmm”, as he did on multiple occasions. I thought to myself, “yeah Doc, I don’t know WTF is going on either.” Seemingly at a dead end, Dr. McCarthy referred me for a second opinion by another very experienced Neurologist, Dr. Mudivarthi, who ultimately became my primary neurologist. Perhaps he had missed something that she might catch.
During my first office visit with her, Dr. Mudivarthi performed many of the same tests that Dr. McCarthy had, as well as some additional tests. Once again, we got inconclusive results. She referred me for additional MRIs, of both my thoracic and my lumbar spine. With those results, we would have a good view of my brain and entire spinal cord. Any abnormality seen in my lower spine might reveal why my legs were so weak and clumsy, but my upper body was not. As hopeful as I was for a conclusive diagnosis following the second round of MRI’s, the results revealed nothing extraordinary. This was a relief to me on one hand, but it made the situation even more confusing and worrisome, on the other hand. There was relief in knowing that I did not have any tumors or visible signs of a serious disease, but we still didn’t know what I was suffering from. Now, some routine conditions had been ruled out by the MRIs. Though it was unlikely, the concern was that I might have some kind of degenerative disease, such as ALS, Multiple Sclerosis or Muscular Dystrophy. My combination of symptoms was so strange that nothing could be ruled out yet. With how disabling my condition was back then, it was very easy to start focusing on the worst case scenarios. Dr. Mudivarthi scheduled a nerve conduction study and muscle function tests, to hopefully eliminate these serious diseases as the cause of my malady.
I hoped that I could get some answers quickly, so that I could make a rehab plan and move on. I never imagined that it was going to take so long to figure out what was causing my problems. I also didn’t forsee how many ups and downs I would have to experience before getting to a place where I felt like my health was headed in the right direction. Throughout this entire process, I have had to ‘wait and see’ many times, running into dead ends over and over. In my next post I will share how this became confusing and a source of angst. I hope that my story will resonate with others who are dealing with chronic illnesses and injuries.
This past year has been the most difficult year of my life. I’m lucky enough to be in a better place right now, but it has been one heckuva ride. I will be sharing my story over the coming weeks. This is part of my journey to healing myself. I think that sharing some of my darkest hours, biggest triumphs, soul crushing set backs and the answer to what ails me (hopefully); will help me find what I am truly looking for in life.
Today, August 29, 2019, marks one year to the day that I went for a run and ended up staggering home, and barely able to stand on my own. It was the day I first wondered if I was ever going to run again. I already new that something was wrong with me, but that day I was frightened of what could come for me. Luckily, the worst case scenario didn’t come true, I am even recovering now. Over the last twelve months, I have only done one strength training workout that didn’t end after two exercises and leave me uncoordinated and clumsy. I have had many comebacks in my athletic life, but all of them have been almost nothing compared to this story.
Just over three years ago, in June of 2016, I posted a story on Facebook about the range of emotions I was experiencing, knowing that I wouldn’t be able to line up on the starting line of the Dipsea Race that weekend. I had a torn meniscus, but didn’t know it yet. I had been in great shape all year and was going to run a great race, until that injury. Well, perhaps I only thought that I was in great shape. I thought that I would bounce back from my knee injury, even if it was severe. I believed that I would be able to regain that great fitness before long. I was actually planning on getting faster in my 37th year on this planet, than I had been when I was 22 years old. Even when I realized that part of my left meniscus was in pieces, I thought that I was starting a journey that might ramp up with some races in the winter and culminate with some very fast races the following spring.
Little did I know that that moment in time, was merely just a stop on a journey that had begun, many years prior to that June day in 2016. There were many warning signs that something was wrong, long before the knee injury that sidelined me from serious competitive running for nearly two years. Unfortunately, most of those warning signs were various symptoms that did not seem to be connected in any way. The various symptoms that I had certainly didn’t appear to be anything that would amount to a serious, or life altering problem. I actually began normalizing the many chronic aches and pains, illnesses and mood swings that I was experiencing. After all, I’m a trained athlete, I enjoy the pain of hard workouts and was used to the daily grind of training for athletic competition.
Two summers after that knee injury, I found myself practically disabled. I was struggling to hang on to my career and life, and desperately searching for answers and a cure for my health problems. I didn’t understand what was going on or why I had trouble walking, looking left and right, up and down, or just doing simple exercises with my Personal Training clients who had physical disabilities of their own. Suddenly, I had to worry about matters more important than my running endeavors, I had to worry about whether or not I could continue working, and whether I would be able to enjoy time with my wife. Eventually, I began to doubt that I was going to ever be able to live freely, happily and productively again.
What I have learned over the last three years, is that my symptoms were not normal issues, and that I should have paid more attention to how those symptoms were negatively impacting my entire life, not just my athletic life. I also learned that had I sought answers to my problems sooner or pushed harder to solve them, it may not have gotten me my answer any sooner than I found it. Since August 2018, I have seen three neurologists, one neurosurgeon, three Physical Therapists, a Gastroenterologist, a Psychiatrist, an Asthma, Allergy and Immunology specialist, four incredible body workers, a Personal Trainer that specializes in Neurological Rehabilitation and I have worked with various other people in healthcare. Every one of them did their best in trying to help me, and I often found some relief from many of them, but I was unable to find the key to my health problems. At every step of the way, our hands would be thrown up, with nowhere else to go, and then I would go see someone else, repeating this cycle again and again.
It wasn’t until I hit what was perhaps the lowest, darkest place I had ever been in. When I felt hopeless and scared of what my future was going to look like, and I began to question any reason for carrying on, something just clicked. While describing, to a client, how the entire left side of my face had gone completely numb earlier that day, I could see in her eyes that she knew something. What I didn’t know was that my life was about to change directions again, but this time in the right direction.
Stay tuned if you want to read more about my journey, I will post what us technically “Part One” very soon.